• Oracle TEAM USA Wins the America’s Cup!

    In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay.  In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win  “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.

    I feel the same way about dealing with Parkinson’s, you need a team to make you great.  The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.

    But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed.   I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.

    I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.

    This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water.  A grand time was had by all.

    One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.

     

  • Parkinson’s Is Not Just Tremors

    “Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor.” 
     
    “This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street, all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”
    Steve Ford, chief executive at Parkinson’s UK
     

     

    I heard these quotes during an interview on BBC Radio the other night and then looked it up on their website. The story is accompanied by a video interview which can be read and seen here.  They recount a study conducted in the UK showing that PWP suffer discrimination because of symptoms other than tremors including the slow gait and balance issues that sometimes make me look like I’ve had one too many before 10 am.  I’ve noticed people looking at me like I might be drunk as we walk into the grocery store and it appears from this study that even if I wore a shirt that said ‘I have Parkinson’s’ they still might think I was inebriated.

    Thanks to the National Parkinson’s Foundation, I carry a card that helps to explain the symptoms and covers various drug interactions in case I need emergency care.

     
     
    The non-tremor symptoms such as slurred speech, facial mask (unable to show expressions), freezing in place, and tipsy gait among others are the little known part of this disease for the general public.  I did not realize how complex this disease can be until I starting researching after my diagnosis but I certainly have a greater understanding now.  I hope that readers of this blog do too.
     

     

    I had a follow up visit with the neurologist last week and he decided to double the medication dosage from .125 to .25 so I have started the increase with my midday dose and then will add the morning and night doses over the next week or two.  The one thing we have already noticed is my soft voice gets stronger after the .25 dose and the balance problems decrease so I am hopeful that .25 three times a day will result in reduced motor symptoms too.  I also received a prescription for physical therapy which we hope will help with the gait issues among others.
     
    I’ve also started a spreadsheet to track symptoms after reading a blogpost by another PWP on the Michael J Fox blog.  I think it is an excellent idea and should be very helpful when meeting with the doctor.  And speaking of Michael J Fox don’t forget his show premiers September 26th.
  • I’m Alright, Just Slow!

    I find myself uttering this remark far too often already 🙂  Unfortunately it was the first of my noticeable symptoms and the one that is still present, even with the improvements from the medication.  While my normal walk in the county park next door has gone from 42 minutes down to 37 minutes since I started the medication, I still have my slow times during the day.  I guess even the walk is still slow, used to be able to complete in 34 minutes a year ago.

    There are many research studies that show exercise helps to slow the progression of PD symptoms so I have been exploring some options in addition to my daily walk.  I have found that the local Tai Chi group has weekly Health Recovery sessions so we plan to give that a try in the next week or so. The instructor said the Health Recovery class is for students who want to address particular health issues with Tai Chi, and also for those who are not able to take the regular beginning class.  The class focuses on a number of exercises rather than on learning the Tai Chi set.  She also indicated that many PWP are able to take the beginning class depending on the severity of their symptoms.  So we’ll start with the Health Recovery class to see how my balance issues effect the training and go from there.  Will give you an update in a future post.

    We also discovered that the National Parkinson Foundation sponsors a retreat every October for newly diagnosed PWP (less than 5 years) and we were able to get into this years offering at the Kripalu Retreat in Stockbridge, MA.  The retreat is the third week of October and covers many topics including yoga, nutrition, medication, exercise, etc.   The retreat is designed for both the PWP and their caregiver so we are excited we are able to attend.

    It’s been a busy couple of weeks since my last post, Mara had her second successful cataract surgery, we celebrated grandson Jacob’s 9th birthday and enjoyed a brief trip to Pickwick Landing state park in the southwest corner of Tennessee to meet up with good friends from Colorado who were attending a family reunion.  And of course we enjoyed many sunsets from the screen porch and a relaxing boat ride on the lake.  I may be slower but Life is good!

    PS Don’t forget the Michael J Fox show, premiering September 26th!!

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

“It does not matter how slowly you go as long as you do not stop.” – Confucius